I joined yesterday
I'm sorry this is so long, but it's complicated.
As a result of a July 2014 colonoscopy biopsy, I found out that my hemorrhoid was actually squamous cell carcinoma of the anal canal - HPV driven. My surgeon/gastroenterologist recommended removing it with a transanal procedure which was done ten later. At my first follow-up, she scheduled a PET scan and set up an appointment with an oncologist. My PET scan was clear. The oncologist told me that the surgical site SHOULD have "lit up" simply due to inflammation and that microscopic cancer cells would not show up on the PET scan. The pathology report was squamous cell carcinoma with significant basaloid features, HPV-driven, poorly differentiated (T2N0M0). She recommended the standard Nigro protocol. Here is where my journey took a different path. As background info, in 1977 I was involved in a car accident. In the decades since, I've had a multitude of surgical procedures that did provide enough pain relief at the time for me to raise my son and continue to lead a productive life. But as I've aged, the pain level has steadily crept up and, most recently, hovers way too close to the level where I am unable to function. I've been lucky that my employer allowed me to do much of my computer work from home starting almost 20 years ago. Back to the AC diagnosis and recommended protocol. Having read everything I could get my hands on, I told the oncologist that I declined the treatment. I did agree to keep the appointment she set up with the radiologist and a follow-up appointment with her, at her insistence. The radiologist assured me that I would only miss 1-2 months from work and would have absolutely no residual effects from the ionizing radiation (imrt type) other than vaginal shrinkage (he only recommends vaginal dilators to sexually active women). I specifically asked him about fibrosis (other than vaginal), the effect on my scarred spinal cord, severely degenerated lower spine and nerve damage, residual pain, enteritis, proctitis, etc., etc. He told me that the literature I was reading was old and that with imrt, he could bend the x-ray beams and, therefore, his patients, once healed, have no residual affects - even with chemotherapy! Yes, he really told me that. I declined the treatment. In our follow-up appointment, the oncologist pretty much guaranteed me that the cancer would return and, should it recur distantly, the prognosis could be grim. I explained to her that, like a cancer diagnosis, chronic pain is something you truly cannot understand unless you've been there. I told her that I know from experience that there are things worse than death.... I've been there and, as the years pass and the pain slowly increases, my greatest fear is having to live there again - I truly fear that more than death. On my "bad" days, I am the most miserable human being on the planet. I don't even like me. I'd never subject my miserable self to someone else, so I prefer to live alone. I value my independence and my ability to be productive in spite of the cards I've been dealt. So, I suppose by design have no real social support. I don't have any financial reserve. In the long term, I don't have the physical capacity to take on anything above my current pain level. Forty years of pain really wears you out. Although they are at times a necessary evil, most of the pain drugs (other than anti-inflammatories and way too many steroids) have side effects that make me unable to think clearly - which makes me unable to do my work, earn a paycheck and keep my excellent employer-provided health insurance. At the then age of 56, I was a long way from paying off my house and being eligible for medicare and social security. And I was scared. Statistically, we all know there are only two choices. Who knows, maybe he is a radiological magician who can cure you without a price. I am not in a position to be able to gamble that possibility. So, every 90 days for the next two years, I got to revisit the issue as my CEA had minimal fluctuations. It will be 3 years in July. I know I am the luckiest person on the planet. Having said that, I would never, ever, ever, EVER recommend to anyone else with an anal cancer diagnosis that they choose my path. Mine may still be the path to a very grim prognosis. I have both respect and (probably moreso) envy for all of you who have been treated, modified your lives to achieve a new normal and who share the priceless wisdom of those experiences. Which is why, for almost three years of lurking, I did not join this group until I thought I had something to contribute... to answer a simple question about removing a tumor from the anal canal. As are we all, my situation is unique. My choices are unique and I would NOT recommend them to anyone. Today, I'm the luckiest person on the planet. I know all too well that tomorrow I could be banished forever from that position. I didn't join any cancer group because I had no experience to recommend. I have been unsure whether anyone else out there would understand. I may be VERY lucky, but it's been a pretty lonely place to be.
Comments
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itsajourney
Welcome to you and thanks for the post. You really have a unique story to tell and I'm glad your decisions have panned out. I would add "so far," but as you know, we all live today knowing that things have worked out for us "so far" when it comes to cancer (and life in general for that matter). None of us knows when we'll be blindsided by a recurrence or a secondary cancer caused by the treatment we received for the first. I am glad you have cautioned anyone who might consider making the same choice you did. While treatment is brutal, it does have a high success rate and is for a relatively short course. That said, I remember meeting with my radiation oncologist and my medical oncologist and being handed written material on possible side effects. Truth be told, I was ready to tuck tail and run after reading about all of the terrible things that could happen to me. However, I went through it, came out the other side, not much worse for the wear, and am still here almost 9 years post-treatment. There have been challenges, hiccups, scares, and adjustments, but it's all been worth it.
I am glad you have finally made your presence known here and told your story. I wish you all the very best!
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It's a journey, and you play the odds of your specific situation
I can really identify with your decision process! But different situations with AC diagnosis will reach very different courses of action.
My wife was diagnosed in Dec 2016, and finished the Nigro protocol on 13 March, and except for mild fatigue, she is back to her normal self. Went horseback riding yesterday with our daughters after leaving me at home for the weekend to watch the dogs! There was definitely a lot of pain for three weeks, but for us, it was a journey through it, to reach a better destination.
I had cancer about 20 years ago (another type than AC), and went to get two other opinions to talk me out of the radiation after surgery. But everyone recommended the radiation, even though a lot of medical papers were starting to say the protocol for my stage should be "watch and wait", and give radiation if anything shows up. So I did the radiation. It was only half the length of the AC treatment, and the only noticeable side effects were mild nausea and a sunburned tummy. A couple years later they changed the protocol officially to "watch and wait". I was a little annoyed, but past is past.
I've read a lot of the great info on this site, both prior to my wife starting treatment and all throughout. My wife will say this was the hardest thing she's ever done, she said it's like delivering a baby constantly for the last three weeks. We talk occasionally about what we hope it's like twenty years from now, when hopefully you can just take a pill to rid yourself of the cancer. Wouldn't that be great?
But for us, like many of the others on this site who have been hit with AC, the choices were different. Many AC primary tumors cannot be surgically removed without a colostomy. So her choices were colostomy, Nigro, or let it keep growing. Keep growing is not an option, it's going to get you if you let it do that. There are many folks who have had a colostomy, and have adjusted to that (I helped my dad through that, and it's amazing that he was able to make that adjustment so easily). But, given the choice, it was a no-brainer for my wife, she didn't want "a bag" as the oncologist so indelicately described it. She knew about the pain, and was told that most people would recover with few lasting side effects. She was otherwise extremely fit before treatment.
The treatment was actually not much outside normal for the first three weeks. I know that some people on the site have had bad effects the first week, but I don't think that is typical. The last three weeks were bad, but I just want to emphasize from our point of view, three weeks of pretty bad pain are worth living another twenty years at a normal level (we are both in our fifties).
I'm happy that your path has worked for you so far, hopefully you can get periodic scans to make sure you're still free of the cancer. But in the event it ever does return, please realize that there are many people that have a bad time through treatment, but recover almost completely within two months.
I hope anyone else reading your post will consider the benefits to be gained from an 80-90% successful treatment, at the cost of 3-4 weeks of very bad discomfort. I think your case is something to be considered for someone already suffering chronic pain. I had a case of sciatica about 15 years ago for a couple months, and after two months of that, I can see that the thought of extreme long term pain would be hard to bear. But for most people, I think it will be in the past soon enough, although not soon forgotten.
I wish you the best,
Pat
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Martha and Pat
Thank you for your posts. After reading them and contemplating your descriptions of the treatment, it occurred to me that I never really gave the treatment process itself much thought. I suppose it's my coping mechanism to ignore the pain with or in front of me and simply focus on the beyond. That's when it occurred to me.... Two months prior to my own diagnosis, my biggest supporter, my rock, my older sister was diagnosed with Stage 4 Small Cell Lung Cancer. If you could draw lung cancer straws, that would be the shortest, most aggressive one in the group. Her prognosis was grim from the get go, but she was determined to beat it. As she was always worrying about me, I never told her about my diagnosis or my decision. In fact, because we shared a lot of the same resources, outside of my doctors, I didn't tell much of anyone. I did not want to pull attention or resources away from her. She told me often how very much she wanted to live and that she was simply "not done yet." When the risks outweighed the benefits and they would no longer give her chemo, she was devastated. I loved her so very much. I would have switched places with her if I could. Even today, when I "focus on the beyond," it's hard for me to picture it without her. I would be foolish not to consider the impact that all of this had on my thinking at the time.... or even today. My younger estranged sister died in May of 2015 of a heroin overdose and my rock, after battling 18 months, passed in September of 2015. Watching her go was so very, very hard. I miss her dearly.
When I tell you both that I am truly happy that you and your wife emerged on the other side of treatment so very well, please believe it comes from the heart. Having watched my sister, my mother, my father and countless other relatives not emerge, I truly rejoice in the success stories. And my family has a few of those too. My brother, though he has a colostomy and requires dialysis three times a week, beat rectal cancer. He told me on Mother's Day how happy he is to be alive and his wife of 40-some years might be the only one who's happier.
Given my extensive family history of a multitude of cancers, I have no doubt that, whether it be AC or some other iteration, I will face this issue again. I am not certain what I will do. I suppose that, in the abstract, none of us are. Life is truly a journey - good and bad - and it can be so very unfair. And although I might feel like the luckiest person on the planet with the AC, I sometimes don't feel so fortunate in most other realms.
Sometimes people do what they do not simply because of foolishness or arrogance or even paranoia of the unknown. Like most things in life, it tends to be a little more complicated. When I think about why, after all this time, I decided to post, perhaps enough time has passed for me bring my "beyond" back into focus.
I thank you both more than you'll know for not simply passing judgment on what you read on the surface, but being willing to dialogue to help me do that.
Deb
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Deb
Please don't take anything I wrote as passing judgement, I certainly didn't mean it like that (but reading it back, I see that it could seem that way). Like a lot of others here have done for me, you've given me great inspiration with your post (and I don't even have AC!), but in a different way than a lot of the others, like Martha. You said at one point that you felt like the luckiest person on the planet, and yet it's clear you've really been put through the wringer with your personal pain as well as family tragedies. I just really wanted to let you know that a lot of people will make it through the treatment without ending up with chronic pain issues, which it sounds like you don't need any more of! Hopefully at three years, you're cruising on towards never seeing another bit of AC. But if you had to do the treatment, there's a good chance it wouldn't cause chronic pain. I know the IMRT plan that they put together for my wife specifically considered minimizing radiation to the spine.
Thank you for your courage!
Pat
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Deb
I do hope you'll stick around with us in this group. The virtual hugs, information, insight and encouragement have been invaluable to me. The people here are awesome and I think you'd fit right in. Take care and know that I wish you the very best always!
Martha
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Judgement
Pat, I didn't think you were being judgemental in your post and Deb you certainly came from a different medical history than a lot of us- it seems like a lot of people on this site were healthy up til they got anal cancer. I respect your decision because that's what was right for you and you clearly thought it out- risk of increased pain from radiation damage just wasn't worth the benefit.
My daughter went to another school's prom and said she had been thinking how weird it was that one of the prom goers was wearing a stocking hat for pictures. She didnt say anything and found out later the student had cancer and that's why he was wearing the hat. We talked about how time and time again we judge people without knowing all the facts. Being less judgemental is a goal and also part of my "journey".
Deb, now that you have started posting I hope you don't stop. You have a different situation but the group is very supportive and accepting.
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Thank you so much for the
Thank you so much for the kind words. Honestly, I think I may have become predisposed to perceiving judgment where none exists. I have been feeling a bit lost. I recently got my third invitation to celebrate Cancer Survivors' Day. I received the first during my sister's Johns Hopkins hospitalization after they rejected her for a new clinical trial because she was unable to breathe - she was determined. I never even gave it a thought. I was so busy running for spinal injections and rhizotomies trying desperately to control the pain so I could truly be with her, wherever that happened to be. Last year, I stared at the invitation a time or two before I threw it away. This year, I find that I'm having this strange internal debate - and judging myself. I simply don't feel that it would be appropriate for me to go and celebrate with "real" survivors. I honestly feel like a cheater and, where I come from, that is NOT something you celebrate. Yes, I spent almost six weeks in some degree of being unable to sit properly and the first week plus was almost exclusively in the bathtub. My urethra was so swollen, it was the only way I could pee. I had the mucus discharge. I discovered that the Skeleton Song pretty much got it ALL wrong. With all the stitches, EVERY bone is connected to the anus bone! It wasn't fun. The anxiety when my CEA warrants another scan isn't fun. BUT my skirmish with AC is NOT every other survivor's battle with the disease. Perhaps it's guilt. I know I feel horribly guilty for being where I am when I read your stories and feel your struggles and I have no wisdom to contribute. Given the way all of this unfolded, there's probably a big guilt component that I am still here and my beloved sister is not. I think maybe I was so consumed with her battle and then in grief that I never really processed what had happened to me. I honestly don't know, but I sincerely apologize for being anything less than gracious regarding your posts. You have no idea how helpful this exchange has been for me - both in my own little eureka moments and to help fill the void left by my lost confidant.
Deb
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Loss
I had a lot of losses prior to and during my cancer diagnosed too- in a two year period my dad died, my mom died, my best friend from childhood suicided, and my mother in law died. I'm also trying to figure out how all that has impacted me along with the cancer.
My son just graduated from high school this past weekend and I really had to fight the feeling it is just another loss because he will be moving out and starting college. Like I was feeling real grief. Other mothers were too so I don't know what degree of sadness is "normal" but my chain of thought was this: next year my daughter graduates and will move out, I'll be an empty nester with my husband for a few years, then he will drop dead because he's older than me and doesn't take care of his health and I'll live the rest of my life alone. Oh yeah, add bladder cancer from the radiation and Alzheimer's (my mom had that so I feel doomed) and that tops it off. Normally I'm a pretty positive person! Can anyone else relate to this?
Deb, I don't think you are a "cheater" for taking a different route to treat your cancer. Your guilt for surviving cancer when your sister didn't reminds me of people who have been in combat and feel guilty they lived- survivor's guilt. It sounds like you you so consumed with your sister's illness you just didn't deal with your own stuff and maybe now you are ready?
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Deb.....
Welcome to our family, I hope today is a good one for you. I appreciate your posting as I find it interesting to hear the unique paths we all take on this journey that in the end.....brings us all to the same place. While we all share certain similarities, we all have details that are specific to only ourselves.
My real true introduction to the world of cancer began about 14 yrs ago when my mother was treated for ovarian cancer. She endured treatment for a couple years but eventually she had had enough. By the time she died, I had learned a great deal about respecting an individuals right to live out their life in a way they felt best suited to the situation. That being said, my mother made sure she was educated on her options and it was important to her to consider the effect of her decisions on those she loved. On the day my mom was moved into hospice my 16year old daughter was in a near fatal car accident and was air-lifted to a hospital several hours away from where my mother was to spend her final days. I was torn apart! I called my mom and greatly down played the accident and told her I'd be there in a couple days. She held on for me to spend one more day with her, and we prayed for my daughter to find strength, yet when I got back to my daughters side she was in severe distress and it appeared we were losing her....then, just as I received the call that my mom had passed, my daughter miraculously awoke and began to recover.
In 2010 my husband was in the hospital with pneumonia when he was also dx with multiple myeloma, a blood cancer. His treatment included aggressive chemo followed by a stem cell transplant. It was a rough road for us both but it seemed to be a success. Then in 2012 I was dx with Stage3b anal cancer. Due to size and placement of my tumor, my treatment included colostomy surgery, chemo and radiation. I was very sick at the time and had some complications that led to admittance to a nursing home. (At 52 years old this was not where I wanted to be) Life was happening and while I was searching for my strength, my young adult children were becoming young parents in need of their moms help. I found it and was discharged!! Shortly after celebrating, my husband was dx with a recurrance of his blood cancer and found himself in need of a full bone marrow transplant. His brother was a perfect match and so the long difficult process began. Not long after a successful transplant, his brother, the one who gave him life, died of an unexpected cardiac event!
Our search for strength continued when on a follow-up scan in 2012, I was dx with a rare breast cancer. Treatment was a mastectomy (I went with a double) and years of estrogen blocking meds to reduce the risk of recurrance. My physical as well as emotional and spiritual strength seemed to increase each time I was kicked down. (My financial strength did not, lol)
I found myself out of work with time on my hands, though questioned just how much...It became clear that no one can ever answer that. I went back to college to complete something I had begun over 35 years ago and was proud to be selected to deliver the student address at my graduation this past December. It was another tough road that required strength of various sorts when half way through my program I was dx with a recurrance of anal cancer in my lung. Treatment this time meant surgery to remove the lobe that contained the mass followed by aggressive chemo (all while doing the wedding flowers for my daughters wedding...the one from the earlier car accident) and, keeping my part-time student status!
Four days after graduation, my husband was dx with a tumor on his spine...an unfortunate recurrance of his multiple myeloma where a tumor grows right out of the bone marrow. The strength search became a way of life for us! His surgery was scheduled by a specialist in Milwaukee several hours from our home, so off we went. He was in the hospital for over a month and then a couple weeks in rehab, but eventually discharged to come home to begin several weeks of radiation and therapy as well as in and out of different braces. Today he is nearly brace free and just finished mowing the lawn and working in the garden!
My most recent scans and test have all been good, and while I continue to have some health concerns, for today at least all are manageable. My life is full and we just celebrated my grandaughter's 1st birthday last weekend. (A sweet little girl who herself is an infant stroke survivor with a dx of cerebral palsy born to that amazing daughter who survived the horrific car accident no less) I keep busy with my children and (now 8) grandchildren, I volunteer at a local community center, and am once again making plans to return to school, just because, I can.
On one hand I have lost so very much, and I even carry some guilt that had I led maybe a different lifestyle, ate different foods, lived in a different town, who knows, crazy thoughts I guess but maybe, I wouldn't be in this spot today and maybe I wouldn't have put my family through all the worry that I have. My dad is 87 years old and while dealing with his own health issues, it hurts me to have him worry about mine at this time in his life. Sometimes I feel like no one understands (thus the NEED to be here on this site where thankfully people do) and I once said I so wish that my family could just "get it" but at the same time I truly hope they never do because the only way to "get it" is to actually get cancer.
I said, that on one hand I had lost so much, but for me, I am so fortunate and blessed to say that what I have gained through this journey is far more than what I have lost, and the only way to have gained what I have, is to have walked this path. I wish you more good days than bad, and know that you are in my thoughts and prayers as you move forward in whatever way you feel best for you.
katheryn
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Katheryn
I thought I "knew" your situation because you've written about your husband's health issues before but the part about your mom's passing at the same time your daughter had the car accident I didn't know. Wow- it gave me chills.I kind of pictured your mom and daughter crossing paths in the next world and your mom telling her to go back -it wasn't her time yet. There's always more to everyone's story isn't there. Thank you for sharing.
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Mollymaude....Mollymaude said:Katheryn
I thought I "knew" your situation because you've written about your husband's health issues before but the part about your mom's passing at the same time your daughter had the car accident I didn't know. Wow- it gave me chills.I kind of pictured your mom and daughter crossing paths in the next world and your mom telling her to go back -it wasn't her time yet. There's always more to everyone's story isn't there. Thank you for sharing.
Yes, it was a day of emotion for which I have yet to find the right words to explain. I was literally sitting next to my daughter holding her limp hand just thinking about the whole situation and wishing that I could just call my mom and have her (my mom) be well, strong, and healthy, and how she would just know what to say to me to make me less worried about losing my daughter. Then the phone call that she was gone! Then, the miracle, I kid you not, minutes later my daughter started to improve, and while needed therapy and follow-ups, was discharged just a few days later.
My mom was a very strong woman, and I've always pictured that transfer of strength in that perfectly timed passing as well.
Whatever anothers belief, mine is that God knows every thought of every second that is in our mind, he knows what happened yesterday, today and what will happen in a zillion years. He knew his plan for my daughter and that she (and our family) would need to feel that strength from my mom in our futures. My daughter has needed that strength in this past year to deal with her own daughters health concerns and I am comforted in knowing that through my mom (and God) she has just what she needs to be an amazing mom of a miracle special needs angel.
katheryn
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Overwhelmed!
Katheryn, Molly, Martha, Deb,
You are all so inspirational! As devastated as it was to have my wife go through this, truly a silver lining is having gotten to hear the stories of your perserverance through much worse. Without the internet, this could never happen, I guess.
You are the best and most courageous people I've never met! (doesn't sound like much of a compliment written like that!)
Pat
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Pat
Thank you for your compliment. I think there are so many people on this site who are inspirational. Survivor stories should be told so that those just starting this journey will know that it is possible to survive this disease and that life after treatment can be very good! Hugs to you!
Martha
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Thank you
Pat, thank you so much for the compliment. I don't feel very deserving of it, if I'd had had a choice I wouldn't have gone thru any of it!
Katheryn, I think a lot of us have strong faith/spirituality and that has helped us get thru these ordeals. And even in the middle of them our faith is re-enforced. When my mom was dying she matter of factly talked about seeing angels and talked about my dad being near although he had passed nine months before. I have no doubt my parents are both watching over me and my family.
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Pat...Pat42 said:Overwhelmed!
Katheryn, Molly, Martha, Deb,
You are all so inspirational! As devastated as it was to have my wife go through this, truly a silver lining is having gotten to hear the stories of your perserverance through much worse. Without the internet, this could never happen, I guess.
You are the best and most courageous people I've never met! (doesn't sound like much of a compliment written like that!)
Pat
Thank you for the kind words.
I never put one's challenges on a scale of who has it worse, since it is all relative to every other situation in a person's life. One person's worst day may seem like a walk in the park when compared to another, but for that person, it is the worst day of their life.
You have been both patient and care-giver so have had the opportunity to wear both shoes and to see things from a broad perspective. I welcome that, and also agree with being grateful to live in a time where technology can connect us in such a close way to other people for support and encouragement when we need it most. Without this forum I would have walked this path feeling very much alone, as I have yet to closely connect with too many people in-person who have endured the treatment for anal cancer that we have. Just knowing that there are so many others out there who are in the same boat has been both heart-wrenching (because there are in fact so many) but also such a great blessing to have a hand to hold, albeit virtual.
I much appreciate your input here, thank you again...
katheryn
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Mollymaude....Mollymaude said:Thank you
Pat, thank you so much for the compliment. I don't feel very deserving of it, if I'd had had a choice I wouldn't have gone thru any of it!
Katheryn, I think a lot of us have strong faith/spirituality and that has helped us get thru these ordeals. And even in the middle of them our faith is re-enforced. When my mom was dying she matter of factly talked about seeing angels and talked about my dad being near although he had passed nine months before. I have no doubt my parents are both watching over me and my family.
Its a good feeling, I know!!!
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Molly,Mollymaude said:Loss
I had a lot of losses prior to and during my cancer diagnosed too- in a two year period my dad died, my mom died, my best friend from childhood suicided, and my mother in law died. I'm also trying to figure out how all that has impacted me along with the cancer.
My son just graduated from high school this past weekend and I really had to fight the feeling it is just another loss because he will be moving out and starting college. Like I was feeling real grief. Other mothers were too so I don't know what degree of sadness is "normal" but my chain of thought was this: next year my daughter graduates and will move out, I'll be an empty nester with my husband for a few years, then he will drop dead because he's older than me and doesn't take care of his health and I'll live the rest of my life alone. Oh yeah, add bladder cancer from the radiation and Alzheimer's (my mom had that so I feel doomed) and that tops it off. Normally I'm a pretty positive person! Can anyone else relate to this?
Deb, I don't think you are a "cheater" for taking a different route to treat your cancer. Your guilt for surviving cancer when your sister didn't reminds me of people who have been in combat and feel guilty they lived- survivor's guilt. It sounds like you you so consumed with your sister's illness you just didn't deal with your own stuff and maybe now you are ready?
Molly,
I read your post this morning. Today was an office day and one of the long ones, so I didn't dare attempt to respond. If you haven't noticed, brevity is NOT my strong point! All day long, the memories kept flooding back. Oh, how I remember the emotional highs and lows of my son going from high school to college. I remember taking a trip late in his senior year to see my (now the only remaining) sister who lives just outside of Myrtle Beach. When we left her place to head west to the mountains, my son wanted to stop at South of the Border. The two of us had not been there since he was in kindergarten. It was a weekday afternoon and we had the place almost to yourselves. We walked and looked and walked and looked. He was unusually quiet. We each got an ice cream and sat together at a picnic table to eat them. Finally, he said to me, "Was it always this run down?" The question just broke my heart. I explained to him that it looked exactly the same as our visit in kindergarten. What was different this time was that he was no longer seeing it through the eyes of a child.
As parents, we do everything in our power to protect our children. When we reach the stage you have in this journey, we know won't be there to protect them. We know they are becoming adults.... in an adult world and we all know what a random and sometimes ugly place it can be. I have no doubt that, as I, you have taught your children to avoid the ugly and to embrace and appreciate all of the wonderful things their new adult lives have to offer. Be proud! I tried very hard to focus on the pride I felt for having guided him this far. It doesn't eliminate that hole in your being when they leave, but it does dull the sharp edges.
My son will be 32 in September. He attended college on the opposite coast. He earned a degree in electrical engineering and bought his first house a few years ago. I still miss him, but I am oh so very proud. And, you know, I think he might still be looking for that old awe-struck, South of the Border feeling. He has biked (the kind with pedals) just about every state in the union, the Swiss Alps, the UK and this year, it was Japan. I am so tempted to tell him the only way I know to feel the wonderment again - through the eyes of his own child.
Be proud! You've given him the tools he needs.
Deb
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Katheryneihtak said:Deb.....
Welcome to our family, I hope today is a good one for you. I appreciate your posting as I find it interesting to hear the unique paths we all take on this journey that in the end.....brings us all to the same place. While we all share certain similarities, we all have details that are specific to only ourselves.
My real true introduction to the world of cancer began about 14 yrs ago when my mother was treated for ovarian cancer. She endured treatment for a couple years but eventually she had had enough. By the time she died, I had learned a great deal about respecting an individuals right to live out their life in a way they felt best suited to the situation. That being said, my mother made sure she was educated on her options and it was important to her to consider the effect of her decisions on those she loved. On the day my mom was moved into hospice my 16year old daughter was in a near fatal car accident and was air-lifted to a hospital several hours away from where my mother was to spend her final days. I was torn apart! I called my mom and greatly down played the accident and told her I'd be there in a couple days. She held on for me to spend one more day with her, and we prayed for my daughter to find strength, yet when I got back to my daughters side she was in severe distress and it appeared we were losing her....then, just as I received the call that my mom had passed, my daughter miraculously awoke and began to recover.
In 2010 my husband was in the hospital with pneumonia when he was also dx with multiple myeloma, a blood cancer. His treatment included aggressive chemo followed by a stem cell transplant. It was a rough road for us both but it seemed to be a success. Then in 2012 I was dx with Stage3b anal cancer. Due to size and placement of my tumor, my treatment included colostomy surgery, chemo and radiation. I was very sick at the time and had some complications that led to admittance to a nursing home. (At 52 years old this was not where I wanted to be) Life was happening and while I was searching for my strength, my young adult children were becoming young parents in need of their moms help. I found it and was discharged!! Shortly after celebrating, my husband was dx with a recurrance of his blood cancer and found himself in need of a full bone marrow transplant. His brother was a perfect match and so the long difficult process began. Not long after a successful transplant, his brother, the one who gave him life, died of an unexpected cardiac event!
Our search for strength continued when on a follow-up scan in 2012, I was dx with a rare breast cancer. Treatment was a mastectomy (I went with a double) and years of estrogen blocking meds to reduce the risk of recurrance. My physical as well as emotional and spiritual strength seemed to increase each time I was kicked down. (My financial strength did not, lol)
I found myself out of work with time on my hands, though questioned just how much...It became clear that no one can ever answer that. I went back to college to complete something I had begun over 35 years ago and was proud to be selected to deliver the student address at my graduation this past December. It was another tough road that required strength of various sorts when half way through my program I was dx with a recurrance of anal cancer in my lung. Treatment this time meant surgery to remove the lobe that contained the mass followed by aggressive chemo (all while doing the wedding flowers for my daughters wedding...the one from the earlier car accident) and, keeping my part-time student status!
Four days after graduation, my husband was dx with a tumor on his spine...an unfortunate recurrance of his multiple myeloma where a tumor grows right out of the bone marrow. The strength search became a way of life for us! His surgery was scheduled by a specialist in Milwaukee several hours from our home, so off we went. He was in the hospital for over a month and then a couple weeks in rehab, but eventually discharged to come home to begin several weeks of radiation and therapy as well as in and out of different braces. Today he is nearly brace free and just finished mowing the lawn and working in the garden!
My most recent scans and test have all been good, and while I continue to have some health concerns, for today at least all are manageable. My life is full and we just celebrated my grandaughter's 1st birthday last weekend. (A sweet little girl who herself is an infant stroke survivor with a dx of cerebral palsy born to that amazing daughter who survived the horrific car accident no less) I keep busy with my children and (now 8) grandchildren, I volunteer at a local community center, and am once again making plans to return to school, just because, I can.
On one hand I have lost so very much, and I even carry some guilt that had I led maybe a different lifestyle, ate different foods, lived in a different town, who knows, crazy thoughts I guess but maybe, I wouldn't be in this spot today and maybe I wouldn't have put my family through all the worry that I have. My dad is 87 years old and while dealing with his own health issues, it hurts me to have him worry about mine at this time in his life. Sometimes I feel like no one understands (thus the NEED to be here on this site where thankfully people do) and I once said I so wish that my family could just "get it" but at the same time I truly hope they never do because the only way to "get it" is to actually get cancer.
I said, that on one hand I had lost so much, but for me, I am so fortunate and blessed to say that what I have gained through this journey is far more than what I have lost, and the only way to have gained what I have, is to have walked this path. I wish you more good days than bad, and know that you are in my thoughts and prayers as you move forward in whatever way you feel best for you.
katheryn
Wow!! For quite some time now, I've had all of this "stuff" rattling around in my head - from guilt to anger to thank God it all turned out okay. And then I read your story - all that "stuff" just faded away as I read. You have truly touched me with your story... your strength... and your faith. By that single gesture of sharing, you have given me what I've been looking for (but didn't know it). The silver lining! It's the simple act of sharing.... of listening (or in this case reading). I started this journey keeping everything to myself for my sister, but she's with your mom for quite some time now. I don't understand how or why you guiding me through your journey has calmed the waters, but, you know, that's okay. The important thing is that you have. And I thank you. You and your family have a permanent place in my prayers.
Deb
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PatPat42 said:Overwhelmed!
Katheryn, Molly, Martha, Deb,
You are all so inspirational! As devastated as it was to have my wife go through this, truly a silver lining is having gotten to hear the stories of your perserverance through much worse. Without the internet, this could never happen, I guess.
You are the best and most courageous people I've never met! (doesn't sound like much of a compliment written like that!)
Pat
You are not so bad yourself. Your journey has been no walk in the park either. What struck me in the way you told it - was the love and empathy that was evident from you both for your wife's AC battle and her horseback ride of victory!
Deb
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